Category Archives: Neurology

I see my Neurologist today and I’m actually going to ask for an MRI. I’ve been on Tecfidera for quite awhile now and I’d like a comparison picture, a before and after if you will. I’m sure I had one just before I started the new drug. We’ll see what they say.
It’s time now to make that list, the one of symptoms since my last visit. I always seem to forget at least one while I’m there. Because I try to focus on the positive, “in my mind” I make small of issues when they’ve gone away. I’m learning to not “blow them off”. Who knows, maybe they can tell me something helpful. Like how to avoid that wall even when I see it coming!

What helps me to get through an MRI is definitely MEDITATION. If you haven’t tried it already…you should!

I learned a long time ago that MS symptoms and lesions didn’t necessarily go hand in hand. You could have symptoms with no lesions, or lesions with no symptoms. You could have many lesions with very mild symptoms, or a few lesions with lots of symptoms. So…I think the “monster in my closet” approach is one way that doctors try to scare new patients into taking these disease modifying drugs(DMD).

Don’t get me wrong; I love the drugs! I’ve been on them since they were first approved by the FDA. I believe they are ONE of the reasons that in the twenty years that I’ve had RRMS, I have not progressed to SPMS. Statistically 50% of all patients 10 years into the disease, do progress from RRMS to SPMS. I wonder if that statistic was calculated before the development of the first disease modifying drug in 1994. If so, I would expect that statistic to be even better for patients diagnosed after 1994 who have had the benefit of these drugs.

The good news is active lesions along with symptoms, means that I’ve NOT progressed into SPMS. If I were symptomatic, with NO active lesions this far into the disease, that would be indication that I had moved from RRMS into SPMS. So, YAY for my active lesions! This also says to me, this relapse will end (remit).

The moral of this story is…make no decision out of fear. I will choose a new DMD very soon; not because there are monsters in my closet waiting to emerge, but, because I believe these drugs have had a positive effect on the course of my disease.

For 10 years now, I’ve seen two Neurologists; one in the mid-west, one on the east coast. The Neurologists near me just don’t know as much about MS. Here’s the problem: both of my current Neurologists are at major teaching hospitals, and both are heads of Neurology at those hospitals. I am nowhere near a teaching hospital where I live now. This takes me from the expertise of an “Academic MS Specialist” who see’s thousands of MS patients; to a “Non-Academic MS Specialist” who see’s only hundred’s. Which one would you rather have?

I want my Neurologist to respect everything that I bring to the table. Be able and willing to explain everything so that I understand it, and then…back the hell up! Give me the time and space to do my own research, considering my options.

Maybe I’m a bit of a nightmare, but I’ve got a GREAT personality!

On my first visit to see my “new” Neurologist, I thought he was nice enough, friendly even; that’s a plus. Middle aged, and, this means I could have him for years. The down side of having Academic Specialist is that they are usually on the downside of their career. My mid-west Neurologist has been practicing medicine for 50 years! About half way through our interview, I mean… conversation; when things were going well, I ask the new guy, “Are you married, do you have children? How many? Do you live in the area?”

Hold on Buddy, keep your pants on! My husband’s in the room! I explained quickly that I’m not being fresh. I want to know these things because I need to know if you’re vested in this hospital, this area, and this life before I commit to you. I’ve been with one Neurologist for 10 years and the other for 15. THEY are not going anywhere; are you? His answers to all of my questions were satisfactory and now it gets sexy. They all want to get you naked as soon as they can. That’s our brain of course, so I agreed to the obligatory MRI. I probably should have been more coy; you know, played hard to get. The problem is, when you’ve been doing this as long as I have, you lose all inhibition.

I listened to his “elevator spiel” on all the new medicines, and even said I would take one. I was looking at the floor, shaking my head NO, while my mouth was saying, “Yes”. He looked at my husband and said, “She’s a real handful…huh?” WHAT! Because I’m not jumping into bed with you? The medicine I had agreed to take was Ampyra; the walking pill. Ampyra is the only medication to date indicated as a treatment to improve walking in patients with MS. It arrived and sat on the kitchen counter for weeks. Like sex…he still had to wait until I was ready. I was scheduled to see him in three months with a report. To my surprise, he called beforehand. He wanted to talk about my MRI, and how the new medicine was going. “Um…it’s not”, I say.

What I needed, I had gotten. A little space, and time to consider my options. A phone call and a little more coaxing at this point were perfect. It was like getting a box of chocolates! My other Neurologist never gave me chocolates.

After waiting a couple more weeks, I gave in and took the pill.

I can be a nightmare; but I’ve got a great personality!

Your Thoughts:

Have you ever felt like you knew more than your Neurologist?

Have you had a Neurologist tell you something about MS that you simply KNOW to not be true?

After combing through Aubagio’s website I came away with nothing. I called Genzyme, the drug company that makes Aubagio, 3 TIMES. I got Tim on the “help” line. After listening to my questions about the blood brain barrier (BBB), and then the molecular size, in Daltons, of the particles that make up Aubagio,Tim on the help line couldn’t get enough HELP to help me!

I refused to give up. The best Tim could do was refer me over and over again back to my physician. THAT was where I had started! All I really needed was a Genzyme scientist or research specialist! Why didn’t they have somebody like THAT on call!?

My confusion: I have one world class Neurologist who is “for” Aubagio and one who is not. The one who is not only gave a vague uncertainty of the blood brain barrier as his reason why. Now the other neurologist is not returning my calls with a prescription for Aubagio or an explanation as to why he’s had a change of heart.
Then, the Wall Street Journal prints an article stating that doctors are suggesting patients not rush to the new medicine.http://online.wsj.com/article/SB10001424127887324595904578123420502281086.html

So…I’m on my own with my magnifying glass and my medical journals! What I find is that Aubagio, like the other disease modifying drugs, reduces relapses and such, but I question whether or not it compromises the BBB, and if so, how it affects the MS brain, its many lesions and their various changing locations within the brain? The unanswered questions and lack of understanding has made me decide to continue my Rebif regiment. I’ll continue to inject until Aubagio has been on the market longer. How long? I don’t know.

What treatments have you found to work best for you?
What alternative or holistic treatments would you suggest?

He said “Don’t take the other MS oral medications Estizer. I know you’ve injected MS medicine for years and have grown weary. I know that you don’t want to go back on any injection, but if you do, for just two or three months, I can promise you there will be a pill. A pill that I will approve, one that has been on the market for some 30 years already. Unlike the others it has a proven safety record. That will be the pill for you, just hold on.”

The Wizard is Dr. Barry Arnason. He’s the head of Neurology at The University of Chicago and he’s been my Neurologist since 1996. We haven’t always agreed, but that’s how I knew he was the best Doctor for me. He could explain his point well, without being condescending, and he would listen to mine. In the end of course, the decision was mine. I’ll never forget the day we met, he wrote me a script for Prozac! I said, “ What the hell is this for?” he said…”You’re crying”. We had a lot to learn about each other,LOL. He did go on to explain that 50% of MS patients are depressed, and since I was crying I was probably depressed.NOT!

My glass is ALWAYS half full.

New MS Oral Medication Aubagio
I Have Waited All My Life For You, Raul Midon

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My name is Estizer Smith. I am a photographer and a teacher. A mother and a wife who happens to also have Relapsing Remitting MS. I enjoy performing and writing a great deal. A current relapse has taken me away from many of those things temporarily and it's been suggested that I blog. I receive positive energy from the interactions while at the same time I get to share my take on what this is like...using an open mic.